The next two weeks after being diagnosed was mentally and physically draining. I was technically anemic. This means that about every 4 hours I felt like I needed to sleep. And I did….a lot! Mentally I was done. The hardest part of this whole ordeal is excepting you have cancer. I haven’t gotten to that stage yet, and I’m not sure when I will.
Sure enough, 3 days after I had my bone marrow test, they finally confirmed I had CML. Now we can go forward with the meds. If you have read my earlier post on “What is CLM” you know that the way they fight this type of Leukemia is with a designer drug called Gleevec. In 2001, the FDA approved Gleevec and it’s been saving people like me ever sense. Without this drug, I would have been told to put my affairs in order. 3 -5 years max. Now with Gleevec, I can go forward, not backwards.
After submitting the paper work to my insurance company and getting the final approval, we were finally able to start Gleevec. This was a bitter sweet day. Bitter that from this day forward, I would be taking this pill every day for the rest of my life. Sweet that because of this pill, I might just have “a life”. My Oncologist went on to tell me that 97% of the people who have CML and take Gleevec will have an normal life. She gave the example of a person who has high blood pressure. As long as that person stays on their meds, they can live a normal life. So, as long as I take this pill every day, check my blood levels regularly, everything will be ok. Worst case scenario, my blood levels start to go back up and I will have to have a bone marrow transplant. But, she told me that not to worry, that everything is looking good.
The first week or so on Gleevec was hell. Within 30 minutes of taking it, I would feel sick, like I needed to throw up. And for the first week, I did. Almost every night. Shortly after that, the bone aches and cramps would start and normally last until late morning. Gradually, the side effects got a little better, but the bone aches still seem to bother me, especially now that the weather was getting colder.
Getting Frustrated with my Doctor
During this time I was visiting my Doctor every week to take blood test and to make sure I was doing ok with the Gleevec. During that first month my blood levels went back to normal, but the side effects were still giving me problems. My Oncologist, although very nice during this whole time, didn’t really know what to do about the side effects and just told me to hang in there. This was tough. During one visit, I was meeting with her practitioner and asked her how many CML patients does my Oncologist have. She said, “you are her 3rd CML patients and we have about 20 that come to this clinic”. As I thought about what she said, no wonder she didn’t know what to do with the side effects, she hasn’t had enough CML patients who have experience what I ‘m going through. In fact, every answer she was giving me about CML, I had already read about on the internet. She never told me anything about my illness that I didn’t already know. What else does she not know? Is this Gleevec really going to allow me to live a normal life?
This really started to bother me. So, I went back to the internet. I wanted to find somewhere that said I have a 97% chance of a normal life. I couldn’t find it. The one thing I did find it that 97% of the people who start Gleevec live past the first 5 years. This is great news, but it says nothing of living a normal life.
I also started to join a couple of different networks. One of the best was the CML page of Facebook. As I read the postings that were there, I started to read a lot of people who started out on Gleevec with no problems and after a couple of years their body would build an immune to it and stop working. The more I read, the more I started losing faith in the “wonder pill” I was taking. I have to have a plan “B”. I needed more answers and I just felt that my Oncologist just didn’t know enough about my illness. I needed to find someone new….someone who only deals with people who have CML.
Tuesday, November 24, 2009
Friday, November 20, 2009
Meeting the Oncologist
One of the most humbling experiences of my life was sitting in the waiting room of the Utah Cancer Specialist office. This is as real as it gets. As I sat there with my wife and our good friend “Nana Jo” I honestly reached over and pinched myself to make sure this wasn’t some bad nightmare. How could this be happening? How did I go from running the Half Marathon in SLC 3 months ago to waiting for my named to be called at a Cancer Clinic. Is this for real? Does this really happen to guys my age? As I looked around, not only was I the only one with all of my hair, I had to be the youngest person in the room by at least 20 years. I didn’t know if I should start to cry or just make a mad dash for the door. And then, it was official, they called my name.
We went through the normal of getting weighed, (now down a total of 22lbs)taking my blood pressure, and getting blood drawn and then they took us to our room. As we waited, we went through our 2 pages of questions we had for the doctor. As the Doctor walked in, you could tell right from the beginning that she was a good person and was very nice. She began by going through the results and explaining what was normal and what was my numbers. Everything was off the charts. White Blood count was high, Red was low. She went on to explain that she was about 99% sure that the type of Leukemia I have was in fact CML but would not know for sure until a bone marrow test was done. So we scheduled the bone marrow test for the following Friday.
Bone Marrow Test
When they first told me that I would need a bone morrow test, I didn’t think too much of it, but now that I have gone though one, it’s one of the worst pains I have every felt. The only place they can take the marrow from is right on your tail bone. They numb the area like a dentist would numb your tooth before he yanks it out. Once the area is numb, they start to take the bone marrow out. At first, is wasn’t so bad than after a while it really started to hurt. The worst part was looking over at my wife, who was watching, had the most pain stricken look on her face that I had ever seen. I knew it was hurting, but to see the pain on her face was hurting me. Than right when I thought it was over, the Doctor said “this may pinch a little” ……Let’s just say words started flying out of my month faster than I could stop them. The good part is, that was over. The bad part, I have to do it again in December. Hopefully it won’t be as bad (at least that’s what I tell myself).
We went through the normal of getting weighed, (now down a total of 22lbs)taking my blood pressure, and getting blood drawn and then they took us to our room. As we waited, we went through our 2 pages of questions we had for the doctor. As the Doctor walked in, you could tell right from the beginning that she was a good person and was very nice. She began by going through the results and explaining what was normal and what was my numbers. Everything was off the charts. White Blood count was high, Red was low. She went on to explain that she was about 99% sure that the type of Leukemia I have was in fact CML but would not know for sure until a bone marrow test was done. So we scheduled the bone marrow test for the following Friday.
Bone Marrow Test
When they first told me that I would need a bone morrow test, I didn’t think too much of it, but now that I have gone though one, it’s one of the worst pains I have every felt. The only place they can take the marrow from is right on your tail bone. They numb the area like a dentist would numb your tooth before he yanks it out. Once the area is numb, they start to take the bone marrow out. At first, is wasn’t so bad than after a while it really started to hurt. The worst part was looking over at my wife, who was watching, had the most pain stricken look on her face that I had ever seen. I knew it was hurting, but to see the pain on her face was hurting me. Than right when I thought it was over, the Doctor said “this may pinch a little” ……Let’s just say words started flying out of my month faster than I could stop them. The good part is, that was over. The bad part, I have to do it again in December. Hopefully it won’t be as bad (at least that’s what I tell myself).
What is CML?
I’m so grateful I live in the day of Google and the Internet. I can’t imagine being diagnosed with this before the internet and having to find out about CML from book and do research from the library. How easy it was to Google CML and in a matter of seconds have more information about my new disease than I could ever know what to do with. But even though I was able to find out tons of information, I was amazed on how much more information my friends and family knew about CML than I did. No one better than my good friend Watcher. Now, Watcher is not his real name, he likes to keep his real name off the internet as much as possible. He has a very successful blog called Watching the World Wake Up watchingtheworldwakeup.blogspot.com Not only did he find a lot of information, he was able to put it all together so that it would make sense. The next part is a clip of one of his post about me and CML. In this post he refers to me as Lance (again, doesn’t like to use real names..). It’s by far one of the best explanations of CML you could ever read.
Leukemia, as most people know, is cancer of the blood or bone marrow. Most of the early symptoms are caused by excessive numbers of white blood cells- Lance’s most pronounced symptom was an enlargement of the spleen- but some types are asymptomatic for many years and are only detected through routine blood tests. Right now Lance has about 25 times as many white blood cells in a given volume of blood than you or I do. There are several different forms of leukemia, which are described as either “acute” or “chronic.” Both adjectives sound pretty bad to me, but it turns out that “acute” means “wicked bad” and “chronic” means well, if not “good”, then better than “acute.”
Lance’s leukemia is one of the chronic forms. Specifically it is chronic myelogenous leukemia (CML) and it turns out that this is one of the most fascinating of all cancers for 2 reasons. First, it was the first cancer to be linked to a specific genetic cause and second, it’s one of the best cancer-research-success stories.
Like other leukemias, CML manifests itself through an abundance of white blood cells. It appears later in life, usually after age 40*, and afflicts more men than women. But though it appears well into adulthood, its origins lie far in the past, all the way back past childhood, birth and even conception.
*Lance is 38.
About 1 out of every 600 humans is born with a reciprocal chromosomal translocation, which is where some of the parts of one chromosome wind up on another non-homologous chromosome. (The real number of such translocations is thought to be much higher, but some underdetermined proportion of them result in spontaneous miscarriages.) Translocations occur during meiosis, the process through which haploid* sex cells (eggs, sperm) are created.
*”Haploid” means having ½ the “full” or “diploid” number of chromosomes. So the sperm from your father and the egg from your mother each carried 23 chromosomes, giving you your “diploid” total of 46.
Side Note: The “non-homologous” bit means that the exchange is between 2 different chromosomes in different locations. Remember, we have chromosomes in pairs, one from each parent. Homologous chromosomes- meaning the two at the same location- routinely exchange genes during meiosis through a process called chromosomal crossover. Occasionally there can be problems in chromosomal crossover, but they’re different problems than the kind of translocation problem we’re talking about here.
About 1 out of every 100,000 people is born with a specific translocation in which parts of chromosomes #9 and #22 wind up in each other’s place. Specifically a piece of chromosome # 9 known as the ABL1 gene winds up in a stretch of chromosome #22 that is part of what’s called the “Breakpoint Cluster Region”. The modified chromosome #22 is known as the “Philadelphia* chromosome” and its presence is considered a firm diagnosis of CML**.
*The research that lead to the discovery of this anomaly took place in Philadelphia.
**About 5% of CML cases don’t seem to involve the Philadelphia chromosome. The cause behind these cases is not clear, but other, similar translocations are suspected.
The ABL1 gene is responsible for encoding a protein that controls several aspects of the cell lifecycle, including cell division. On the other hand, geneticists aren’t exactly clear on the function of the BCR region over on chromosome #22. But they’re very clear on what happens when that hunk of ABL1 winds up in BCR. An alternate protein is created- a protein that doesn’t exist in the rest of us. (I pulled this graphic from the University of Bonn Medical Center site. It’s way better than anything I could’ve cooked up.)
This protein, called the BCR-ABL fusion protein, “works”, but works a little differently from the standard (ABL1) protein. It doesn’t require activation by another protein; it’s active from the get-go. It activates several other proteins related to cell lifecycle, effectively speeding up cell division. And on top of that, it seems to work against some of the very same DNA repair mechanisms that prevent cancerous cell growth.
Tangent: The various “mistakes” in genes and gene replication is in itself a fascinating topic. Translocations, copying errors, deletions and other anomalies have played a huge role in the evolution of life. Here’s a quick example from the very same chromosome- #9- that effects far more than 1 out of 100,000 of us. One of the genes on chromosome #9 is the ABO gene, which determines your blood type. People with blood type O, which includes about 40% of Europeans (including me) are actually missing a single “letter” in their ABO gene. This one-letter ancestral deletion shifted the relative positions of a whole bunch of other “letters” within the gene, and dramatically altered the way ABO is expressed; specifically our blood cells are different.
The interesting thing about blood types is why there are multiple types around. If the A/B/AB types are better than O, or vice-versa, why wouldn’t one or the other come to dominate over time? The likeliest reason seems to be disease resistance. If you have type A, B, or AB blood, you have probably stronger resistance to cholera than I do. But it seems likely that my resistance to malaria is better than yours.
CML’s probably been around forever. Most people who have ever lived didn’t make it till 40 anyway, and those of our ancestors who did presumably got their baby-making and child-rearing out of the way before then. But today most of us in the developed world make it well past 40, and as recently as a decade ago, CML was most often something of a slow death sentence. It was usually treated with various chemo-type drugs (cytarabine) and in younger patients, sometimes bone marrow transplants*.
*Bone marrow transplants can cure CML, but there’s a good chance of the transplant killing the patient.
Chemotherapy (and radiation) treatments are intended to “work” by killing cancerous cells. The obvious problem with these therapies is that it is extremely hard to kill cancerous cells without killing lots of healthy cells in the process, which is why chemotherapy is so terrible for the patient. When most people think of a cancer “cure”, they often think of some miracle drug that would somehow recognize and kill only cancerous cells, but since cancer takes so very many forms, this seems like a tough dream to realize.
In 2001, the FDA approved a type of drug called Imatnib, marketed by Novartis under the name Gleevec. Gleevec doesn’t kill cancer- or any-cells. Rather it inhibits the action of the BCR-ABL fusion protein. The development was an excellent example of Rational Drug Design, a methodology pioneered in the 1990’s of designing drugs by understanding their specific biological targets.
Gleevec therapy is not without its downsides. In its early phases the medication causes significant nausea and body aches. It’s also expensive; without insurance it costs ~$5,000/month. And you take it forever. Lance has insurance; hopefully he’ll be paying more like $500/month. So that’s like a sports-car payment for the rest of your life, which I guess isn’t a bad deal seeing as you get a life. But it’s worth thinking about what would it would mean if Lance had been between jobs, or without coverage; treatment would likely bankrupt him and his family within a few years*.
*Yes, this is my plug in support of public-option healthcare reform. If all those other little crappy** countries can do it, surely we can.
**Special Note for Non-US Readers: Forgive me. I don’t really think your countries are “crappy” at all. That’s just the kind of ra-ra jingoistic trash-talk we Americans use to get each other riled up about doing important stuff, like putting people on the moon, curing diseases or invading other countries.
But chances are (97%, according to Lance’s oncologist) that within a couple of months the Gleevec will get Lance’s renegade protein under control, his white-blood cell count will decline, and he’ll be feeling well again, quite likely better than he’s felt in a year or more.
Cost, bureaucracy and hassle aside, there are great cancer stories, and Gleevec is one of them. Lance isn’t out of the woods yet, but there’s light at the end of the tunnel*.
Leukemia, as most people know, is cancer of the blood or bone marrow. Most of the early symptoms are caused by excessive numbers of white blood cells- Lance’s most pronounced symptom was an enlargement of the spleen- but some types are asymptomatic for many years and are only detected through routine blood tests. Right now Lance has about 25 times as many white blood cells in a given volume of blood than you or I do. There are several different forms of leukemia, which are described as either “acute” or “chronic.” Both adjectives sound pretty bad to me, but it turns out that “acute” means “wicked bad” and “chronic” means well, if not “good”, then better than “acute.”
Lance’s leukemia is one of the chronic forms. Specifically it is chronic myelogenous leukemia (CML) and it turns out that this is one of the most fascinating of all cancers for 2 reasons. First, it was the first cancer to be linked to a specific genetic cause and second, it’s one of the best cancer-research-success stories.
Like other leukemias, CML manifests itself through an abundance of white blood cells. It appears later in life, usually after age 40*, and afflicts more men than women. But though it appears well into adulthood, its origins lie far in the past, all the way back past childhood, birth and even conception.
*Lance is 38.
About 1 out of every 600 humans is born with a reciprocal chromosomal translocation, which is where some of the parts of one chromosome wind up on another non-homologous chromosome. (The real number of such translocations is thought to be much higher, but some underdetermined proportion of them result in spontaneous miscarriages.) Translocations occur during meiosis, the process through which haploid* sex cells (eggs, sperm) are created.
*”Haploid” means having ½ the “full” or “diploid” number of chromosomes. So the sperm from your father and the egg from your mother each carried 23 chromosomes, giving you your “diploid” total of 46.
Side Note: The “non-homologous” bit means that the exchange is between 2 different chromosomes in different locations. Remember, we have chromosomes in pairs, one from each parent. Homologous chromosomes- meaning the two at the same location- routinely exchange genes during meiosis through a process called chromosomal crossover. Occasionally there can be problems in chromosomal crossover, but they’re different problems than the kind of translocation problem we’re talking about here.
About 1 out of every 100,000 people is born with a specific translocation in which parts of chromosomes #9 and #22 wind up in each other’s place. Specifically a piece of chromosome # 9 known as the ABL1 gene winds up in a stretch of chromosome #22 that is part of what’s called the “Breakpoint Cluster Region”. The modified chromosome #22 is known as the “Philadelphia* chromosome” and its presence is considered a firm diagnosis of CML**.
*The research that lead to the discovery of this anomaly took place in Philadelphia.
**About 5% of CML cases don’t seem to involve the Philadelphia chromosome. The cause behind these cases is not clear, but other, similar translocations are suspected.
The ABL1 gene is responsible for encoding a protein that controls several aspects of the cell lifecycle, including cell division. On the other hand, geneticists aren’t exactly clear on the function of the BCR region over on chromosome #22. But they’re very clear on what happens when that hunk of ABL1 winds up in BCR. An alternate protein is created- a protein that doesn’t exist in the rest of us. (I pulled this graphic from the University of Bonn Medical Center site. It’s way better than anything I could’ve cooked up.)
This protein, called the BCR-ABL fusion protein, “works”, but works a little differently from the standard (ABL1) protein. It doesn’t require activation by another protein; it’s active from the get-go. It activates several other proteins related to cell lifecycle, effectively speeding up cell division. And on top of that, it seems to work against some of the very same DNA repair mechanisms that prevent cancerous cell growth.
Tangent: The various “mistakes” in genes and gene replication is in itself a fascinating topic. Translocations, copying errors, deletions and other anomalies have played a huge role in the evolution of life. Here’s a quick example from the very same chromosome- #9- that effects far more than 1 out of 100,000 of us. One of the genes on chromosome #9 is the ABO gene, which determines your blood type. People with blood type O, which includes about 40% of Europeans (including me) are actually missing a single “letter” in their ABO gene. This one-letter ancestral deletion shifted the relative positions of a whole bunch of other “letters” within the gene, and dramatically altered the way ABO is expressed; specifically our blood cells are different.
The interesting thing about blood types is why there are multiple types around. If the A/B/AB types are better than O, or vice-versa, why wouldn’t one or the other come to dominate over time? The likeliest reason seems to be disease resistance. If you have type A, B, or AB blood, you have probably stronger resistance to cholera than I do. But it seems likely that my resistance to malaria is better than yours.
CML’s probably been around forever. Most people who have ever lived didn’t make it till 40 anyway, and those of our ancestors who did presumably got their baby-making and child-rearing out of the way before then. But today most of us in the developed world make it well past 40, and as recently as a decade ago, CML was most often something of a slow death sentence. It was usually treated with various chemo-type drugs (cytarabine) and in younger patients, sometimes bone marrow transplants*.
*Bone marrow transplants can cure CML, but there’s a good chance of the transplant killing the patient.
Chemotherapy (and radiation) treatments are intended to “work” by killing cancerous cells. The obvious problem with these therapies is that it is extremely hard to kill cancerous cells without killing lots of healthy cells in the process, which is why chemotherapy is so terrible for the patient. When most people think of a cancer “cure”, they often think of some miracle drug that would somehow recognize and kill only cancerous cells, but since cancer takes so very many forms, this seems like a tough dream to realize.
In 2001, the FDA approved a type of drug called Imatnib, marketed by Novartis under the name Gleevec. Gleevec doesn’t kill cancer- or any-cells. Rather it inhibits the action of the BCR-ABL fusion protein. The development was an excellent example of Rational Drug Design, a methodology pioneered in the 1990’s of designing drugs by understanding their specific biological targets.
Gleevec therapy is not without its downsides. In its early phases the medication causes significant nausea and body aches. It’s also expensive; without insurance it costs ~$5,000/month. And you take it forever. Lance has insurance; hopefully he’ll be paying more like $500/month. So that’s like a sports-car payment for the rest of your life, which I guess isn’t a bad deal seeing as you get a life. But it’s worth thinking about what would it would mean if Lance had been between jobs, or without coverage; treatment would likely bankrupt him and his family within a few years*.
*Yes, this is my plug in support of public-option healthcare reform. If all those other little crappy** countries can do it, surely we can.
**Special Note for Non-US Readers: Forgive me. I don’t really think your countries are “crappy” at all. That’s just the kind of ra-ra jingoistic trash-talk we Americans use to get each other riled up about doing important stuff, like putting people on the moon, curing diseases or invading other countries.
But chances are (97%, according to Lance’s oncologist) that within a couple of months the Gleevec will get Lance’s renegade protein under control, his white-blood cell count will decline, and he’ll be feeling well again, quite likely better than he’s felt in a year or more.
Cost, bureaucracy and hassle aside, there are great cancer stories, and Gleevec is one of them. Lance isn’t out of the woods yet, but there’s light at the end of the tunnel*.
Wednesday, November 18, 2009
The Bad News…
So that night, after going to see the Doctor, I didn’t really think about what was wrong with me. Worse case scenario, I thought something was wrong with my spleen and I may have to get it removed. Of course I went to the internet and saw this wasn’t a huge deal, a person can live without his spleen, and thought that would be it. Well, it wasn’t it. That next day on July 3, 2009 the phone wrung at about 9:10. It was Doctor Eberhard and he didn’t sound too happy. The first thing he said is “ Jason, I’m sorry to have to tell you this over the phone. But you don’t have Mono…” I said, well great. “ He said not exactly…..At that point I put the phone a speaker so that my wife could hear what he was saying. He said “ again, I’m sorry to tell you this over the phone, but I feel like we need to find a specialist as soon as possible and want to get your permission to do so” I said, ok, what are we dealing with. “ He said Jason, you have Leukemia.” ……You hear about people who have something bad happen to them or they hear some bad news and their whole life flashes before their eyes…..well, I now know what that means. My whole life came to a stop. My wife began to cry, I began to cry, I told the doctor to do what he had to do, but to find me a specialist. I hung up the phone, and I could hardly breath. I started to hug my wife and I promised her that I would not let this kill me. That I would fight this with every muscle I had….As husband, we all make promises to our wife’s. Most of the time, if not all, we have complete control of those promises of whether or not they can happen. I had just promise my wife something I had no control of. And she believed me. This was the one promise in 16 year I had better live up to. I had to fight this. I have too much to lose. I would not let my kids go on in this life without a dad. This could not be happening. This can’t happen.
The next hour felt like a week. I didn’t know what I should do. Should I start calling family? Do I need to cancel business meetings I had scheduled for that coming week. Do I tell my boss? Do I tell the kids? What do I tell the kids? All I could do was wait for the next call from my doctor to tell me the next steps. Within a hour, Dr. Eberhard called back. He told me that he did find a specialist at the Utah Cancer Specialist. Because it was the weekend before the 4th of July, that his offices were closed until Monday. But he did have a chance to look over my blood results and he was about 99% sure I had a Leukemia call Chronic Myeloid Leukemia (CML). He was told by the specialist to tell us that it is a type of Leukemia, that with the proper medication, can be manageable. He also said that not worry and to try and have a good weekend….(that part always makes me smile). Well, as you can imagine, the next 3 days was hell. The hardest part was trying to not think about it until we found out more information. Luckily, we have a friend who is a Doctor, that was a great help in finding out as much information about CML as possible. By the time we got to the specialist office on Monday, we had as much information as we needed to ask the doctor the right questions.
The next hour felt like a week. I didn’t know what I should do. Should I start calling family? Do I need to cancel business meetings I had scheduled for that coming week. Do I tell my boss? Do I tell the kids? What do I tell the kids? All I could do was wait for the next call from my doctor to tell me the next steps. Within a hour, Dr. Eberhard called back. He told me that he did find a specialist at the Utah Cancer Specialist. Because it was the weekend before the 4th of July, that his offices were closed until Monday. But he did have a chance to look over my blood results and he was about 99% sure I had a Leukemia call Chronic Myeloid Leukemia (CML). He was told by the specialist to tell us that it is a type of Leukemia, that with the proper medication, can be manageable. He also said that not worry and to try and have a good weekend….(that part always makes me smile). Well, as you can imagine, the next 3 days was hell. The hardest part was trying to not think about it until we found out more information. Luckily, we have a friend who is a Doctor, that was a great help in finding out as much information about CML as possible. By the time we got to the specialist office on Monday, we had as much information as we needed to ask the doctor the right questions.
Going to the Doctor
Visiting the Doctor for me is like having to visit that one family member you really don’t care for ,but know you have to see them at least once a year. I only go to the Doctor if I’m bleeding or my wife tells me to. So you can imagine my wife’s surprise the day I told her that I was going to see the doctor. I wasn’t bleeding and she hadn’t told me to go, so something serious had to be wrong. I told her that I was having a little pain in my side and I thought I better go get it looked at. She was concerned and thought it was a good idea to get it checked out. I called my family doctor, Dr. Eberhard, and he couldn’t see me until Thursday. Well, today was Monday and I just couldn’t stand another night with the pain in my side. So, I decided to go to an Insta-care. Not a huge fan of the Insta-car, but I like the idea of going in without an appointment and seeing someone the same day. So, they took me in the room and after about 15 min, the Dr. came out. Young guy, maybe late 20’s, but seem to know what he was doing and he was very professional. I told him of the pain I has having and after poking around ( which hurt so bad I almost cried….ok, I did cry) He thought that the pain I was experiencing was from and enlarged spleen. He then asked me if I was tired a lot, I said, “why yes, now that you mentioned, I am tired a lot”. He then said, “I think you have Mononucleosis” (Mono). I then asked him “ don’t I have to kiss a lot of women to get that? I’m married, I only kissed my wife..” Not knowing if I was kidding or serious, he went on to explain that you can get Mono a lot of different ways and he wanted to do a finger prick to find out for sure. So sure enough, he pricked my finger and the result came back positive. He then went on and gave me some info about Mono, told me to sleep a lot, and that if that pain in my side didn’t go away or get any better to go see my regular Doctor. Well, by Thursday the pain was worse, it hurt to walk. Luckily, I never canceled the appointment I had with my Doctor and decided to go. The first thing he said to me when I walked into the door was that there was no way I had Mono, I was too old. I also had no other signed other than the enlarge spleen. At that point I could tell he was getting a little worried. It was toward the end of the day and he was ordering his nurses around to make sure they drew my blood before the pickup person from the lab got there. At one point I remember asking him what he thought was wrong and he said I’m not sure, I just want to rule out or confirm Mono. He took some blood and said, “I will try and get back to you either tonight or tomorrow and let you know what we are fighting. ” So, I went on my way not really aware or prepared for what was about to happen.
Second Sign
About a week after I found out I had superficial blood clots in my leg I started to notice a couple of other things that were just not right.
The first thing was I was still losing weight. I know, I know, you’re thinking “this is bad because…” well, it was bad because I wasn’t trying. I had loss 12lbs in less than 3 weeks, with no effort what so ever. Now, I’m a big guy and big guys can lose weight fast, but you at least have to put in some effort. Like stop eating that fifth meal at the end of the day. Or stop eating the bag of cheetos just before dinner. Or my favorite, eating a bowl, or two, of cereal before I go to bed. All of this I was doing.
The second thing was that the night sweats were getting worse. They got to a point that I would wake up in the middle of the night and change the towel I had put over my pillow because it was so wet that it felt like I had just gotten out of the shower. At one point I had put the two together and thought maybe this is why I’m losing so much weight, without the thought of why I was having the night sweats. (again, I went to Hillcrest High School, I’m not very bright.)
The third thing was that I was always tired. I just thought I was being lazy, not running or eating right. But I would get home from work and feel like I had just run 10 miles. The days that I got to take a nap, I would sleep for 3-4 hours and still be able to sleep at night. This was not normal.
The fourth and final thing was the one that really got me to think that something was wrong. I started to have a strange pain in my left side. Kind of like when you run for the first time in a long time and your gut feels like it’s going to explode. At first I thought it was, again, not eating right, not running, stress at work. At first it was a mild pain, only hurt if I would touch it or bend the wrong way. But after a while, it would hurt to breath. I got the hick ups one day, and I thought I was going to die. I finally knew after a couple of weeks I had to do something about this, I couldn’t pretend that nothing was wrong any longer.
The first thing was I was still losing weight. I know, I know, you’re thinking “this is bad because…” well, it was bad because I wasn’t trying. I had loss 12lbs in less than 3 weeks, with no effort what so ever. Now, I’m a big guy and big guys can lose weight fast, but you at least have to put in some effort. Like stop eating that fifth meal at the end of the day. Or stop eating the bag of cheetos just before dinner. Or my favorite, eating a bowl, or two, of cereal before I go to bed. All of this I was doing.
The second thing was that the night sweats were getting worse. They got to a point that I would wake up in the middle of the night and change the towel I had put over my pillow because it was so wet that it felt like I had just gotten out of the shower. At one point I had put the two together and thought maybe this is why I’m losing so much weight, without the thought of why I was having the night sweats. (again, I went to Hillcrest High School, I’m not very bright.)
The third thing was that I was always tired. I just thought I was being lazy, not running or eating right. But I would get home from work and feel like I had just run 10 miles. The days that I got to take a nap, I would sleep for 3-4 hours and still be able to sleep at night. This was not normal.
The fourth and final thing was the one that really got me to think that something was wrong. I started to have a strange pain in my left side. Kind of like when you run for the first time in a long time and your gut feels like it’s going to explode. At first I thought it was, again, not eating right, not running, stress at work. At first it was a mild pain, only hurt if I would touch it or bend the wrong way. But after a while, it would hurt to breath. I got the hick ups one day, and I thought I was going to die. I finally knew after a couple of weeks I had to do something about this, I couldn’t pretend that nothing was wrong any longer.
First Sign
Back in June of 2009 my father-in-law was in town to spend time with the boys and work in my yard. (Yes, he is the best father-in-law on the planet!) We had decided to do a road trip. My wife has some relatives/friends in Alberta Canada who have a potato farm. We thought it would be fun to take a vacation up to Canada while my father-in-law was in town to see the farm and visit with family. So, we packed up the kids, loaded up the car with more crap than we could possibility ever use in a week, and headed out. I must admit, my wife planed this trip perfectly! She had everything set to make sure that no one was bored and the kids didn’t have to spend too much time in the car. We had planned on splitting up the trip into three days. When we finally got to Canada I started to notice a weird lump on the lower part of my left leg. I also started to notice that I was having head sweats during the night. Not thinking much of it, we spent a wonderful time in Alberta and started to head home. On the last day of our trip, the pain in my leg was starting to get worse. Now I had two lumps in my lower leg and a big bruise on my hip. Knowing this wasn’t normal ( I know, what a surprise for me thinking outside the box) I decided to go to the Dr. office the day we got home. Dr. Eberhard checked me out and concluded I had a superficial blood clot. He just figure It must had been from all the driving we did, and sitting in a strange position for a long period of time. I also started to notice some weight loss. When I got a the scale at the Doctors office, I noticed I had loss some weight on the trip. Kind of surprised sense all I did for the last 10 days was eat tons of sweets and ate out every day. But none the less just chalked it up as….”cool” and Not knowing this was the first few signs of something really bad.
What is this blog about...
The last 4 months have been crazy. As I look back at what’s been going on, the biggest regret I have is that I haven’t written anything down. I have no journal, no log of the experiences, both good and bad, of what I have learned during this challenge. The next few post will be a recap of some of the experiences I have gone through while finding out I have Leukemia (CML)
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